woman lives without stomach to dodge cancer
summer heide had her stomach removed after learning she had the gene for the deadly hereditary diffuse gastric cancer syndrome.
4 minute read
getty
summer heide was just 27 years old when she made one of the most difficult decisions of her young life.
the saskatchewan farmer had known for years that she possessed a gene mutation that vastly increased her risk of developing hereditary diffuse gastric cancer syndrome, a rare and deadly form of stomach cancer. she was just a toddler when her 29-year-old aunt succumbed to that very disease in 1991. alarm bells would ring 16 years later when her aunt’s daughter erin — heide’s cousin — received the same diagnosis at the age of 20. she would be dead in less than a year.
“it was just too much fear over the unknown,” heide told cbc. “there was always the little bit of, ‘when is the ticking time bomb going to go off? when might i get the cancer?’”
hereditary diffuse gastric cancer syndrome, as heide’s family would learn, is the result of a mutation of the body’s cdhi gene. this mutation causes roughly one to three per cent of stomach cancers while elevating the risk of globular breast cancer. the “diffuse” nature of the disease means that the abnormal cells can grow by themselves or in small clusters making it difficult to diagnose until it is often too late.
the specific number of families with hdgc is unknown, according to cancer.net. the overall incidence of gastric cancer varies in different parts of the world. in the united states, it is estimated that less than one per cent of the population will develop stomach cancer of any kind; only a small fraction of these will be due to hdgc. the highest rates of gastric cancer in the world are in china, japan, and other countries in southeast asia, as well as in central and south america.
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given the hereditary aspect of the disease — children have a 50 per cent chance of inheriting the deadly gene from a carrier parent — doctors recommended erin get tested for the presence of the gene before her death. “we didn’t know none of this until it was far too late because erin had already been diagnosed with stage 4 of this form of cancer,” said luke lawrence, erin’s father. “so (the testing) was to create an awareness for the family, more so than what we could do for erin. that’s why we did it.”
after learning erin did indeed carry the gene, heide and seven members of her family decided to get tested. five of them tested positive, including heide. “it was devastating, obviously, but i think i was so young and naive that i didn’t actually think about what that meant,” she said.
a genetic counsellor told heide the only way to ensure her cousin’s fate would not be her own was to have her stomach completely removed via a prophylactic total gastrectomy. she initially balked at procedure because doctors couldn’t guarantee she would be able to have children after it was done. heide was eager to start a family, but her gene mutation would soon force her to make another difficult choice: if she opted for in-vitro fertilization, doctors could pre-screen her embryos and only implant ones without the gene abnormality.
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“i didn’t want to do that,” she said. “i do feel like some feel, like, it’s a little bit selfish, because i could spare my kids from having the gene. but i wouldn’t get the kids that i have if i were to choose that and i would never choose anybody different.”
after putting the surgery on the backburner and successfully giving birth to two children, heide began to grow increasingly restless as her cancer fears returned and began to consume her thoughts. she focused on making every day as special as possible. “no one would love (my daughters) like me,” she said. “so every christmas or birthday, or any type of holiday, i would always go above — take lots of pictures, make it perfect — in case it was their last one with me.”
in 2014, a still-procrastinating heide received the wakeup call she needed when her 23-year-old sister ali tested positive for the gene. ali quickly made the painful decision to have the surgery and doctors found evidence of stage 1 cancer in her stomach tissue. the discovery finally prompted heide to act. she had her own stomach removed at a calgary hospital the following year.
“knowing you carry a gene with such devastating potential is a heavy weight to carry,” she said. “it was heavier than i could mentally handle any longer.”
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two years after the surgery — and a long, painful recovery — heide, to her surprise, became pregnant again. while carrying her third child helped reset her body, she said it also shifted her fears back to her young children. she has adjusted to life without a stomach and eats small, frequent meals, making sure to grind everything down to a mush in her mouth before swallowing so as not to overload her small intestine. it’s not an experience she is interested in teaching her children.
“the worry about myself has now been put onto my kids, because i just worry and hope that none of them have the gene,” she said. “it’s hard, but it is what it is.
“we’re lucky that we get a chance at life.”
dave yasvinski is a writer with healthing.ca
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